Make the Creating Hope Act Permanent

The Creating Hope Act pediatric priority review voucher program has been wildly successful. It is critical that Congress reauthorize the program permanently so that children with serious illnesses can have hope for new therapies, better health and even possibly cures.

The Creating Hope Act establishes an incentive for drugs to be developed expressly for children with rare diseases. The incentive is a priority review voucher that can be earned by a company that develops a rare pediatric disease drug. The vouchers come with rights to faster FDA review of any other drug, including a drug that would not be for any rare pediatric diseases.

PriorityReviewDrugs5_22_20_edited-1Since the passage of the Creating Hope Act pediatric priority review voucher program, the FDA has approved 24 new therapies for children with serious illnesses, six of which are for children with cancer.

Vouchers have traded for as much as $350 million, providing a significant incentive for drug development for seriously ill children. $2 billion in vouchers have been traded.

The Creating Hope Act has helped children like Emma Whitehead, who was treated with the first FDA approved drug for a gene therapy, Novartis’ Kymriah, for B-cell precursor ALL. Kyrmiah earned a voucher.  In addition, Y-mABs Therapeutics is using the pediatric priority review voucher program to develop exciting new therapies for children with neuroblastoma and other pediatric cancers.

Now is the time for the Creating Hope Act to be permanently reauthorized. There is clear evidence of its impact. There are only 103 days before the Creating Hope Act expires.  On this fourth reauthorization, we are asking for permanency.  Congress has passed two other voucher programs based on the provisions of the Creating Hope Act  — for tropical diseases and medical countermeasures.  Both of these voucher programs are permanent while the Creating Hope Act is not. Now is the time we make this permanent for our children!

Good News!  Senators Bob Casey (D-PA) and Susan Collins (R-ME) introduced The  Creating Hope Reauthorization Act (S. 4010) in the Senate. We are thankful to them for introducing a companion bill.   Soon we will draw up an action plan for members of the  Senate.  Meanwhile, we need to continue to get members of the House Energy and Commerce Committee to cosponsor because we only have until September 30th to get this bill voted on before it expires.  

This is the action you can take to get this bill sent to the floor of the House for a vote:

Tweet and/or call members of the Energy and Commerce Committee in order to get this bill sent to the House for a vote.  Use sample below for your request:

Please approve HR. 4439, The Creating Hope Act Authorization in order to provide incentives for drug development for children with rare diseases and pediatric cancers.

Representative ST DT Twitter Area (202)
O’Halleran, Tom AZ 1st @TomOHalleran 225-3361
Eshoo, Anna G. CA 18th @RepAnnaEshoo 225-8104
Ruiz, Raul CA 36th @CongressmanRuiz 225-5330
Peters, Scott H. CA 52d @RepScottPeters 225-0508
Matsui, Doris O. CA 6th @DorisMatsui 225-7163
McNerney, Jerry CA 9th @RepMcNerney 225-1947
Castor, Kathy FL 14th @USRepKCastor 225-3376
Carter, Earl L. “Buddy” GA 1st @RepBuddyCarter 225-5831
Loebsack, David IA 2d @DaveLoebsack 225-6576
Shimkus, John IL 15th @RepShimkus 225-5271
Kinzinger, Adam IL 16th @RepKinzinger 225-3635
Schakowsky, Janice D. IL 9th @JanSchakowsky 225-2111
Brooks, Susan W. IN 5th @SusanWBrooks 225-2276
Bucshon, Larry IN 8th @RepLarryBucshon 225-4636
Guthrie, Brett KY 2d @RepGuthrie 225-3501
Scalise, Steve LA 1st @SteveScalise 225-3015
Kennedy, Joseph P., III MA 4th @RepJoeKennedy 225-5931
Sarbanes, John P. MD 3d @RepSarbanes 225-4016
Dingell, Debbie MI 12th @RepDebDingell 225-4071
Upton, Fred MI 6th @RepFredUpton 225-3761
Walberg, Tim MI 7th @RepWalberg 225-6276
Long, Billy MO 7th @USRepLong 225-6536
Gianforte, Greg MT All @GregForMontana 225-3211
Kuster, Ann M. NH 2d @RepAnnieKuster 225-5206
Pallone, Frank, Jr. (Chair) NJ 6th @FrankPallone 225-4671
Lujan, Ben Ray NM 3d @RepBenrayLujan 225-6316
Tonko, Paul NY 20th @RepPaulTonko 225-5076
Latta, Robert E. OH 5th @BobLatta 225-6405
Johnson, Bill OH 6th @RepBillJohnson 225-5705
Walden, Greg     (RM) OR 2d @RepGregWalden 225-6730
Schrader, Kurt OR 5th @RepSchrader 225-5711
Doyle, Michael F. PA 18th @USRepMikeDoyle 225-2135
Duncan, Jeff SC 3d @RepJeffDuncan 225-5301
Flores, Bill TX 17th @RepBillFlores 225-6105
Olson, Pete TX 22d @RepPeteOlson 225-4831
Burgess, Michael C. TX 26th @MichaelCBurgess 225-7772
Veasey, Marc A. TX 33d @MarcVeasey 225-9897
McEachin, A. Donald VA 4th @RepMcEachin 225-6365
Griffith, H. Morgan VA 9th @RepMGriffith 225-3861
Welch, Peter VT All @PeterWelch 225-4115
McKinley, David B. WV 1st @RepMcKinley 225-4172

George “G.K.” Butterfield Jr.Representative for North Carolina’s 1st congressional district, introduced  HR. 4439 on September 20, 2019

HR. 4439 has 21 cosponsors (9R, 12D)

Bilirakis, Gus [R-FL12] (joined Sep 20, 2019)
Engel, Eliot [D-NY16] (joined Sep 20, 2019)
Hudson, Richard [R-NC8] (joined Sep 20, 2019)
Kelly, Mike [R-PA16] (joined Sep 20, 2019)
Kelly, Robin [D-IL2] (joined Sep 20, 2019)
McCaul, Michael [R-TX10] (joined Sep 20, 2019)
Mullin, Markwayne [R-OK2] (joined Sep 20, 2019)
Rush, Bobby [D-IL1] (joined Sep 20, 2019)
Speier, Jackie [D-CA14] (joined Sep 20, 2019)
Fitzpatrick, Brian [R-PA1] (joined Sep 24, 2019)
DeGette, Diana [D-CO1] (joined Oct 4, 2019)
Luria, Elaine [D-VA2] (joined Feb 25, 2020)
McMorris Rodgers, Cathy [R-WA5] (joined Feb 25, 2020)
Carson, André [D-IN7] (joined Mar 4, 2020)
Clarke, Yvette [D-NY9] (joined Mar 4, 2020)
Davis, Rodney [R-IL13] (joined Mar 4, 2020)
Rutherford, John [R-FL4] (joined Mar 4, 2020)
Blunt Rochester, Lisa [D-DE0] (joined Mar 11, 2020)
Barragán, Nanette [D-CA44] (joined Apr 23, 2020)
Soto, Darren [D-FL9] (joined Apr 23, 2020)
Cárdenas, Tony [D-CA29] (joined May 15, 2020)

The Creating Hope Act Authorization has been endorsed by the following organizations: 3/32 Foundation, Adam’s Angels Ministry, Alex’s Army Childhood Cancer Foundation, Amanda Riley Foundation, Association of Pediatric Hematology Oncology Nurses, Braden’s Hope For Childhood Cancer, Bridge the Gap – SYNGAP Education and Research Foundation, Brooke’s Blossoming Hope for Childhood Cancer, Brown University/Hasbro Children’s Hospital, Caleb’s Crusade for Childhood Cancer, Cancer Care Manitoba, Cancer Free KIDS, Carson Leslie Foundation, CHEMOWARRIOR: the Eli Sidler Foundation, Children’s Hospital of Philadelphia, Chloe’s Journey of Faith Foundation, Christina Renna Foundation Inc., Circle of Care, Conner Cares, Curtana Pharmaceuticals, DADA2 Foundation, Daniel’s House Publications, DBSA, EveryLife Foundation for Rare Diseases, FFAME (Family, Friends and Allies of ME/cfs, Foster Tree Service, Gabriella’s Smile Foundation, Georgetown Lombardi Comprehensive Cancer Center, GIC Group/Global Food Safety Forum, Gold Rush Cure Foundation, Grace Way Foundation, Grandparents in Action, Harvard Medical School/ Massachusetts General Hospital, International Society of Paediatric Oncology (SIOP), Jack’s Angels, Jeffrey’s Voice, Joey’s Wings Foundation, Jonah’s Just Begun, Julia’s Grace Foundation, Kids vs Cancer, Kids Without Cancer, Kier’s Kidz, Lucy’s Love Bus, Mackey Children’s Cancer Foundation, MIB Agents, Michael Mosier Defeat DIPG Foundation, NanoValent Pharmaceuticals, National MPS Society, National Organization for Rare Disorders® (NORD), NF2 BioSolutions, Noah’s Bandage Project, Noah’s Hope, Oral Health Nursing Education and Practice, Pediatric Assessment, Learning & Support, Pediatric Cancer Foundation, Pediatric Valley Medical Center, Perlmutter Cancer Center at NYU Langone Health, Rally Foundation for Childhood Cancer Research, Rett’s Roost, Sadie Keller Foundation, Samuel Jeffers Childhood Cancer Foundation Section 32, St. Jude Children’s Research Hospital, Stephen T Marchello Scholarship Foundation, Super Sam Foundation, Swifty Foundation, Syndax Pharmaceuticals, Team G Childhood Cancer Foundation, Teen Cancer America, The Cooper Max Foundation, The Cure Starts Now North Texas, The Dandy Horse, Inc., The Jesse Heikkila Foundation, The Maeve McNicholas Memorial Foundation, The National Children’s Cancer Society, The Nicholas Conor Institute, The Progeria Research Foundation, The Rare Childhood Cancer Advocacy Group, The Scott Carter Foundation, The Steven G AYA Cancer Research Fund, The Valerie Fund, This Star Won’t Go Out, Toby Knapp Radio, Wade’s Army, We Believe Foundation, Wylie’s Day Foundation, Y-mAbs Therapeutics Inc., Biotechnology Innovation Organization